Sibling Leadership Network provides support for adult siblings of people with disabilities

Much of the care and responsibility for people with disabilities falls to their parents, but as Erin Hutzelman, a doctoral candidate at the University of Toledo, points out, as time passes, the care often transfers to their siblings.

“These siblings then are caring for their aging parents, their own children and their sibling with a disability,” Hutzelman said.

Sibling Leadership Network (SLN) is a national organization that connects adult siblings who care for a brother or sister with an intellectual or developmental disability (I/DD) to discuss struggles, share advice and provide mutual encouragement.

Hutzelman, whose research in health education focuses on intellectual disabilities and ways to improve health in adult siblings with disabilities, recently joined SLN’s board of directors as chair of network development after attending a conference for the group’s Pennsylvania chapter. SLN has chapters in 13 states, including Ohio SIBS in Ohio and MISibs in Michigan. Hutzelman’s role in SLN allows her to serve as a liaison between state chapters and the national organization as well as develop new chapters.

“Right now in Ohio we have local groups in Cleveland and Columbus, but I would like to start one in Toledo,” Hutzelman said.

She is setting up a focus group for adult siblings of people with intellectual disabilities in Toledo on Oct. 19. While not designed for the siblings with disabilities themselves, this meeting will provide their brothers and sisters an opportunity to discuss the joys and challenges of caring for I/DD individuals.

“I hope to collaborate ideas for better health for these siblings of people with disabilities,” Hutzelman said.

Hutzelman’s academic interest and activism in this area stems from personal experience.

“I grew up with an older sister with an intellectual disability so I’ve always been interested in health and special needs education. As an undergraduate, I studied health and physical education with a minor in adapted physical activity,” said Hutzelman, who before coming to UT taught health and physical education at a middle school in Virginia, where she volunteered her planning time to teach health to special needs students.

“No one ever hears of this. I started doing research on what difference it makes to have a sibling with a disability, and that’s how I learned about SLN,” she said.

SLN, in addition to providing siblings of people with I/DD a way to connect, also provides education for siblings and their supporters on the latest relevant research and policy advocacy. The organization also works to provide siblings a voice in policy issues that relate to I/DD, particularly in advocating that the definition of “family” of a disabled person include siblings.

Any adult sibling of someone with a disability is welcome to join SLN or any of their state chapters such as Ohio SIBS. There is no cost to join. SLN and many of its chapters also have resources for teen and child siblings too. MISibs will be holding the MISibs State Conference in Novi, Mich., on Oct. 25-26, and Ohio SIBS will be having its 13th annual Adult Sibling Conference in Columbus on Nov. 8-9. Both events are open to the public.

“SLN and Ohio SIBS provide a much needed social support system,” Hutzelman said. “You have to get to know someone pretty well before you would even learn they have a sibling with a disability, so a lot of siblings are go it alone with little support. This system lets us discuss our struggles. ‘What did you do with this issue? How is life better with your sibling?’ It’s good to talk to people in the same situation.”

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on Friday, October 11th, 2013 at 3:21 pm and is filed under Eye on Health, People.
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